Restless Legs Syndrome (RLS) Discussion Board

Thank you for your suggestion on taking two iron supplements in one dose. I will start doing that tomorrow morning at least one hour before eating breakfast. I am able to get sleep on the .75 mg dose of ropinirole.

I found some hydrocodone that were left over from some dental work I had done a few years ago. I decided to stop taking ropinirole for five days and use hydrocodone to help with transition. I have gone 3 nights without taking ropinirole. The first night I did not take any hydrocodone and had to walk all night with no sleep. The next day was hard as the RLS symptoms bothered me all day. That night I took 7.5 mg of hydrocodone and slept for 9 hours. Last night I took 5 mg of hydrocodone and got about 5 hours sleep. The RSL symptoms seem to be decreasing.

After day 5, I am going to try 300 to 600 mg of Gabapentin to see if it is effective.

It's a blessing that you had some hydrocodone to help you stop your ropinerole.
Just wondering why you didn't follow your doctor's suggestion of tapering starting with reducing every other night. Did you think this would take too long?
I only ask because tapering is the way I came off it down from 5mg.

You might find that after 5 days a dose of 300 - 600mg gabapentin will not be effective.
Will you have sufficient hydrocodone to supplement if needed.

Polar Bear,

I hope that stopping ropinirole for five days will speed up the process of getting off it completely. I plan to give gabapentin a few days even if I don't get much sleep. If I have to go back to ropinirole, I will try to keep dose to .5mg or less.

You're doing really well! I hope you don't have to go back to ropinirole. Can you get a longer-term supply of hydrocodone for breakthrough symptoms after withdrawal is over? Or maybe order some kratom, if it's legal where you live.

badnights,

Thank you for the encouragement. Today is day 10 off ropinirole. I have not been able to get a good nights sleep without using hydrocodone. I don't think I can get a longer supply of hydrocodone, so I have alternated nights between taking it to stretch my supply. Therefore, I get a good night sleep every other day. Day 7 and 8 were the worst but now my RLS symptoms have lessened.

Tonight I did not take hydrocodone. I took gabapentin at 600 mg and CBD oil (60mg/1ml Charlotte's Web). I have never tried CBD but a friend told me it works for her RLS so I am giving it a try. I was able to sleep for 2 hours but I woke at 1:30 am due to RLS but the symptoms are milder. I can lie on the couch and do other things like type this response and the RSL goes away. I'll try to sleep again later tonight. I am also going to try Horizant. If Horizant is not effective, I will probably have to go back to ropinirole at the lowest possible dosage while I try to get my iron levels up.

I go back to the doctor in February to test serum ferritin levels. If it shows little or no change, I'll see if I can get an iron infusion. My current level is 45mcg/l.

I really appreciate you and others on this site and all the great information on RLS.org. It is helpful to read others experience and to share my own.

Day 10 off ropinerole is wonderful and to be getting a good night's sleep every other night is a blessing.
To be able to lie on the couch at this stage is very positive, well done. I hope you are successful with Horizant and hope very much that you do not have to go back to Ropinerole.

I took gabapentin at 600 mg and CBD oil (60mg/1ml Charlotte's Web). I have never tried CBD but a friend told me it works for her RLS so I am giving it a try. I was able to sleep for 2 hours but I woke at 1:30 am due to RLS but the symptoms are milder

You might want to try a week without the CBD oil, or take the oil in the mornings. I tried CBD oil a number of times, and it always, unless I was taking THC as well, always caused fractured sleep.

I suggest you do not go back to ropinirole on its own, ever, but at some point in the future, you might be able to add a small amount of ropinirole to the gabapentin or Horizant; they would complement each other. However, I would wait at least a few months (preferably a year!) before trying that, because no one seems to know how long it takes the dopamine-receptor system to re-set after taking dopamine agonists. Some of us feel it might take years.

At least wait til your iron numbers are better. Low ferritin puts you at greater risk of augmentation - in other words, if you add ropinirole back in too soon, before your ferritin concentration has improved, you might augment very quickly.

But anyway - you might not need that. When can you try the Horizant? Soon, I hope. You have done so well to get this far without much in the way of medical help. I salute you! Keep reading and learning, it can only work in your favor. And have you looked into kratom? It might be a good thing to have in your back pocket over the next few months as you try to stay off ropinirole and raise your ferritin level.

I got a prescription of Horizant on December 11 so this is my third night using it. I did not get any sleep the night of the 11th and had to take 7.5 mg hydrocodone on the 12th around 2 a.m. after I was still unable to sleep due to the RLS symptoms. I took Horizant a bit earlier today at 5 p.m. and will not take any CBD oil. Hopefully, it is just taking a few days on Horizant for it to be effective. The RLS symptoms are less than they were when I first stopped Ropinirole so I am encouraged. I will stay off Ropinirole as long as I can. Will need to come up with an alternative to hydrocodone as my supply is getting low. Hopefully, the Horizant will work this week.

I hope it does. It is not always effective for withdrawal, since symptoms become extreme for a while. Even if it doesn't cover the symptoms, at least it is helping somewhat, and that's something. I wish you were seeing more improvement than you are by now; but it's different for everyone and at least you're starting to see the improvement now. That means you probably won't go back to the ropinirole.

As for an alternative to the hydrocodone - have you looked into kratom?
EDITED to correct kraton to kratom

Badnights,

This is my 8th night taking Horizant and I still have to take hydrocodone to get sleep. I took 5 mg of hydrocodone tonight and symptoms are still enough to keep me awake. The symptoms are tolerable as long as I do something to keep my mind occupied. But when I try to fall asleep, the twitching and creeping sensation in my feet keeps me awake.

Is there a strain of kraton that is best to try? My other option is to see if a .25 mg dose of ropinirole with Horizant will work. I''ve got to come up with some solution that gives me enough sleep to do my job. I'm working from home due to COVID-19 restrictions so I have flexibility with my work hours. I will not be able to keep this up once I return to the office and my normal travel schedule.

Two days ago I did not fall asleep until 7 a.m. and slept until noon. Thankful for the sleep but I need to be able to sleep at night.

I have used Kratom. I use the strain Red Borneo. It takes about 45 minutes to kick in. I find that it will relieve minor RLS before they get a hold. However it does not benefit me with sleep. I think for sleep benefit it needs a higher dose than I used.

I haven't used it for some weeks as my RLS is pretty well controlled but I keep it in reserve. My dose would have been between 1 and 2 teaspoons. Add a little boiling water and let sit for 15 minutes to dissolve and remove the grittiness. Then I add a little orange juice. Toss it back. Then a drink of orange juice to follow. It tastes very bitter but the OJ helps.

You can get it in capsules but need to take quite a few to make up a dose. I just use the powder, hold my nose (figuratively), and swallow several times.

bhud it sounds like your baseline WED/RLS might be bad enough that gabapentin will not be enough for you. At least, not for the next year or so (eventually your symptoms might improve, either because the dopamine system takes that long to re-normalize, or because your health is improving in other ways).

Can you try to see your doctor sooner than February? To justify requesting an earlier appointment, explain that you are not able to sleep, no matter how exhausted you get, because your movements keep you awake. (It's not the movements, it's the sensory abnormalities and the urge to move, but no one seems to be able to visualize that). Explain also that your work is falling behind because you're stupid during the day from lack of sleep, and you don't know how much longer you can endure this.

When you do get to see the doctor - I sure hope you don' t have to wait til Feb - tell him/her the same thing - - if you keep a sleep diary for a few weeks, show it to him - explain that each box represents an hour of sleep, that this line is midnight, that a down arrow is when you lay down, an up arrow is when you had to get up, and solid shading is when you were sleeping. "See, I got an hour here, and here I got another 40 minutes, and ...." So he/she can see graphically just how fractured your sleep is and how little it adds up to, and how long that has been going on. Sleep diary: It is extremly hard for other people inlcuding doctors to imagone what WED/RLS is like, not only because the sensations are indescribable but because normal humans fall asleep when they get tired enough - in the middle of dinner, or in the middle of a conersation - and we don't. People have to be told that we can't fall asleep no matter how tired we are, when the symptoms are on us, because normal humans will sleep thru anything if they're tired enough so it doesn't occur to them that some people can't.

But if you have to wait til Feb, hopefully you can get yourself some kratom - sorry about my typo in the other post. You might need to titrate it up quickly to find an effective dose - if 1 tsp doesn't do anything after 2 hours, take another one... if that does nothing, the next night start with 3 tsp - maybe something like that.

badnights,

Thank you. I'll try to get a doctor appointment before February and complete the sleep diary. This is my 12th night on Horizant. Tonight I also took .5 mg of Clozapine also took 2 Ibuprofen. I laid down at 11 pm and woke at 1 am and am still awake due to sensation to move. It is 4:30 a.m. now. Hope I can sleep for a few hours around 6 am. That is time that I can sometimes sleep.

Thank you for recommendations on how to talk with the doctor. It is hard to communicate how disruptive this is to my life and family and the sleep diary is a good tool to aid communication. On the positive side, this is my 22nd day off ropinirole and my symptoms are less than they were when I was taking it. However, I was able to sleep when I was taking ropinirole. I was hopeful Horizant would be a good replacement. My supply of hydrocodone is almost gone. I use it when I am really hitting the wall due to sleep deprivation.

@bhud
Maybe your doctor can raise the dose of Horizant even if you can't get an appointment.

If you order kratom, I don't use it, but you could try Red Vein or Red Borneo - see my post here: viewtopic.php?p=98335#p98335. It's old now but probably the varieties to order are the same and the sellers might be the same too.

Keep hanging in there, and make careful plans to get a doctor to understand your situation and help as much as he/she can.

I had to get sleep so I went back to ropinirole. A .5 mg dose is enough for me to get sleep and I am not going above that dosage. This will be my third night taking it again. I am working on getting doctor appointment but expect he will tell me to stay on ropinirole as long as I get results at this dosage.